HKU Bulletin May 2015 (Vol. 16 No.2)

Advance care planning in the West is very individualistic… But in the Chinese and Asian context, we cannot just focus specifically on the patients because no big decisions are made by the individual alone. It is always a family decision. Dr Andy Ho Chinese people are perfectly willing to talk about death and want to plan for it.” However, it is not a simple case of copying the experience of the West, said Dr Ho, who has been studying advance care planning. “Advance care planning in the West is very individualistic – you talk with the patient about what they want and follow their wishes. But in the Chinese and Asian context, we cannot just focus specifically on the patients because no big decisions are made by the individual alone. It is always a family decision. In order for advance care planning to work, the care team has to work with the entire family to come up with a consensus about what the family wants and what the patient wants, and help them negotiate a decision that every party is satisfied with.” Off-key findings There is also a caveat about advance care planning: it may not always achieve the desired outcome for patients. Dr Ho has also been studying data on health and retirement collected from 3,700 subjects in the United States over the past 10 years, including psychosocial well-being in the final days of life. “Surprisingly and disconcertingly” people suffering from lung and heart disease, stroke or memory problems who had advance directives experienced greater depression, pain and social agitation than those who did not have directives, he said. “There are two possible explanations for this. People with advance directives are more educated and probably know specifically what they want, so perhaps their demands and expectations of care are higher. “The second possibility, more importantly, is that people who execute advance directives may be much more focussed on getting the Scholars in HKU’s Faculty of Social Sciences have initiated several community programmes over the past decade to reduce the stigma attached to death. From 2006 to 2010, the Centre on Behavioural Health (CBH) coordinated Project ENABLE (Empowerment Network for Adjustment to Bereavement and Loss in End-of-life), which received HK$20 million in funding from the Hong Kong Jockey Club to raise awareness and conduct training and research to improve attitudes towards death, dying and bereavement. In 2011 the Centre developed the Hospice Home website ( www.hospicehome.hk ) with Death dialogues in the community documents signed than treating this as part of a process. They want people to sign off their lives and once they sign the document, that’s the end of it. “Advance directives should be the beginning of an important dialogue to help the physician and his interdisciplinary care team understand what the patient wants. The final goal should not be signing the document, but providing continuous dialogue and support, and re- visiting these goals to see if they have been taken care of.” That requires a shift not only in how the dying are cared for, but how their caregivers are prepared. Attuned to the dying The professionals who care for the dying can experience death anxiety, negative attitudes to death and emotional burnout. “A lot of people working in end-of-life and palliative care may have the clinical skills to treat dying patients, but emotionally and psychologically, they are not prepared to provide support in relieving their existential suffering,” Dr Ho said. He has developed art therapy and mindfulness programmes to help frontline social workers, nurses and doctors in Hong Kong and Singapore express their feelings about death and cope with the pressures. HKU’s Li Ka Shing Faculty of Medicine has also made reflections on death, dying and bereavement part of its new Medical Humanities curriculum, which was launched in 2012. Recognising that this can be an uncomfortable and emotional topic for young doctors-in-training, many of them still teenagers, the curriculum eases them in with reflections on death in art, film and literature, an introduction to cross-cultural customs and rituals, a visit to the mortuary and, in their the Li Ka Shing Foundation and the Hospital Authority. It provides information on caring for the terminally-ill and honouring their memory, for patients, their families, medical staff and volunteers. Last year the Faculty organised the 10 th International Conference on Grief and Bereavement in Contemporary Society, which was attended by about 1,000 people from around the world. Public education events were also organised, such as a ‘Death Café’ to talk about death. The Faculty also provides death education training for service professionals and periodically conducts public surveys on death fourth year, an opportunity to shadow a health-care professional and observe discussions relating to end-of-life care. Professor Leung explained their humbling goals: “It is only through living with those experiences and really having the opportunity and privilege of sharing the last days of a patient’s journey, that can one even begin to appreciate how inadequate we are as healthcare providers. All we can possibly hope to do as teachers is to inculcate in students that sense of awakening, that they need to learn more, think more and always be sensitive to these emotions if they wish to become better practitioners.” The secret is to hold on to the objective, professional values of their medical training, but with heart. “Above all, it’s about helping people to live better even as they die. It’s easier than it sounds. It requires doctors to be human,” he said. Such awareness, among doctors as well as other caregivers, could inspire improvements in how Hong Kong cares for the dying. “There is no government-led initiative on end-of-life care in Hong Kong, so it is all down to the leaders of hospitals and nursing homes,” Dr Ho said. “They will eventually face the end of life, too. When they do, what service do they want to see? Having passion and compassion can help to drive and accelerate the process to change.” attitudes, which have generally become more positive over the past few years, although a significant minority still think recently-bereaved families should stay to themselves because of the ’bad luck’ attached to them. Professor Cecilia Chan, who founded the CBH, was a central organiser in all of these events and believes their work is far from done. “We must do much more to encourage community acceptance of death. We want there to be fewer regrets for family members and less unfinished business for people who pass away,” she said. The International Conference on Grief and Bereavement in Contemporary Society (ICGB), the renowned tri-annual international event that was held in Asia for the first time, brought together over 1,000 local and overseas scholars. Conference participants from around the world joined the Death Cafe sharing. The mindfulness workshop is part of the Medical Humanities curriculum for doctors-in-training. 08 | 09 The University of Hong Kong Bulletin | May 2015 Cover Story